raising other people's kids, documenting life, ear to the ground

Main menu

Tag Archives: autism

It’s that time of the year again. Time to break out all those posts I’ve been working on in my head and actually write them down to share the with you. For the last few years I’ve done what I call my Autism Blogathon – a blog a day for the month. Brace yourselves for the onslaught!

Day One

It’s Tuesday. That means we’ve been up busting a move to get fed, dressed and out the door. I scoot through the morning traffic like a rally driver to arrive on time at L’s speech therapy appointment. Just made it today. I just make it every week.

Speech therapy has been a part of our weekly schedule for many years now. It’s also part of our daily lives as most of the therapy is done at home. Our lovely speechie Judith sets the tasks that we work on throughout the week. Over the years I think I may now have done almost as much study as her! I’ve done courses, learnt Makaton (a sign language), I’ve read and practised. I’ve repeated and slowed my speaking style. I know what a preposition is. I’ve perfected simple instructions. I’ve left space for processing and response. Years and years of it. Thousands and thousands of dollars.

It’s paying off.

It’s so exciting to hear the new sentences, the questions and the answers. L is following directions (miracle!! right there!!!). I can negotiate with him. I can help to calm him with words. He can wait, knowing what is coming next. We no longer live in the world where it’s instant gratification or the sky is falling. It’s a wonderful thing.

I was never certain that my boy would learn to talk or choose to use the spoken word as his form of communication. He is learning and he does choose. Every day.

I have just hauled a massive bag of toys into my bedroom (home of many random things). I’ve done this to reduce the madness with all the gifts that Christmas brings.
So we are down to a low-ish level of stuff without depriving the three boys of things to do and read and play with.
Because, in another corner of the room, not very far away is a massive great pile of presents. They are starting to tower over the tiny Christmas tree I’ve been using for years.
I’m not a big traditionalist when it comes to Christmas. We most certainly celebrate it and enjoy the time with friends and family but our Christmas is a little different to most.
When possible I try to help the kids have time with their families on or very close to Christmas Day. That might mean meeting in a park for a play on Christmas morning, or packing them up for a sleepover on Christmas Eve. In this way their families get to have this special time together.
It means something to me to be able to help make that happen. It also means that Christmas Day is a little different as I don’t always get to gather my little boys together to share this day. This year the two older boys will be off with their families and I won’t see them till Boxing Day. Other members of my family will not be around this year so me and the baby are heading down to Byron Bay to spend the day with friends who live right near the beach. We will be having a lovely time with swims, playing on the sand, some great summery food and wonderful friends.
Have a great Christmas everyone.

Australia is at a pivotal moment in developing a National Disability Insurance Scheme which would ensure that all people with disabilities would have an equal standing regardless of how their disability was acquired, among many other benefits. The Federal Government is seeking support from all of the Australia states in order to commence the initial phase of the scheme.

Where I live in Brisbane, our very new, very conservative Premier is in slash and burn mode and is playing a political game by holding out on contributing, saying we are virtually bankrupt.

I am just so frustrated and angry about this. All I can do is write. See below for the latest news.

Dear Premier Newman,

I’ll be dropping off my 5yo foster child to your office later today, just for a visit. You clearly need some real life experience when it comes to disability. He is after all, a ‘child in care’, so bottom line he is YOUR responsibility and will be for many years to come.

Now, don’t cheat and get your relatives – whoops, I mean advisors in to help. Just take the time to enjoy his company. He does scream a lot but don’t worry, he enjoys it. You’ll have that in common. He’s not interested in toys but he does enjoy ripping paper. He can help you get rid of all those annoying appeals to your humanity and leadership potential when it comes to disability. Do not turn your back on him or let him out of your sight. He’s also what is called a ‘runner’. If he didn’t have a couple of formally diagnosed disabilities, he’d be called an absconder. Thank goodness we’ve got those labels sorted!

Oh, don’t forget to take him to the toilet. Despite talking about the toilet relentlessly, he will not warn you that he needs to go, kind of like the mixed messages you give. You will have a big mess to clean up and not even your advisors will volunteer to help you out with that job. Don’t get angry if you get mess all though your carpet, on your seating, walls and all over you. Just remind him calmly that we do this in the toilet. It’s dirty work, but you’re excelling in that department. You’ll manage.

If you need to do something: cut a few more public service jobs, sob to the media about how poor we are, then just get on and do it. You get used to being scratched, pinched and pushed. Just be thankful he only bites himself and not you.

Whatever you do, don’t let him get distressed. You won’t be able to do a thing if he has a meltdown. George Street will grind to a halt and start judging you on your parenting skills.

If you need a break, just call your mate Ms Davis over at the Department of Communities, see if you can organise some respite. I dare you! If you can get anyone to answer a phone, they will tell you that there’s not one single placement available in the Brisbane region.

Plenty of kids are waiting in line as soon as one becomes available. There’s babies being born every day who come under your responsibility. Kids in desperate need, just waiting for someone to put their hand up and volunteer to love them and care for them while their families can’t or won’t.

You might get a respite offer from another region. You are a pretty important person after all. If you do, would you mind driving 2+ hours or so to drop him off, then go get him again afterwards? You’ll need to use your own personal car for that. If you’d like to get reimbursed for the fuel, there’s a form that you submit, that goes into a black hole. You might hear back sometime next year but you probably will have axed those kind of supports by then, so I wouldn’t bother.

That’s about it. You’ll be right! He’s only five and it’s not like he’s in a wheelchair or anything. I’ll miss him, but I’m trusting you to do the right thing and look after him. I’ve got to get myself off to the rally protesting your pathetic and callous disregard for the people with disabilities in Queensland.

A quick update. It is 15 degrees (59f) has been raining for 2 days solid and tonight we are driving off to spend a few days at the beach as a part of our mid-year school holidays. I actually love doing off season activities, so we’ll wear our rain jackets and enjoy the empty beach. Being an optimist, I’m sure we’ll also get some beautiful clear crisp days as well. Fingers crossed.

It’s been busy on the home front. Baby J is now one year old! Not only that, but last night he took his first wobbly, unaided steps and today he is walking across the room. Go baby go!

N has been talking non-stop – and I mean non-stop for a while now and, typically for a 2yo is giving some royal command performances with his impressive tantrums. Favourite topic of conversation? Trevor’s motorbike. Trevor is my neighbour and his ears must burn with the number of times his name is mentioned in a day.

L is as challenging as ever and I am hoping that the disruption to his routine that the school holidays bring will not make things even worse. I start each day hoping that I have the patience and reserves I need to get through it. I’m constantly seeking out new, engaging activities for him and that certainly helps.

What is not helping is my godforsaken back – oh no! Oh yes! Actually, it’s not my back. It’s more my hip. And now I officially sound like a really old lady, uh oh, I feel like one too! My sacro iliac joint (where the back and the hip connect) is very unhappy with me. Having my spine fused has meant that this joint has had to take some punishment. I need to rest it as much as possible, but with three little boys? It’s not happening folks. So, I’m strapped up, I’m medicated, I’m desperately trying to avoid the next earth shatteringly, excruciating jab. Sadly, this will take some time to heal and I’m already a month into this new world of pain. Enough whinging.

I’m back. I was so happy that I made it to the end of the blogathon. The following week I went through major withdrawals then I felt a bit depressed and had no energy for anything. I’ve just come through a hellish long weekend where L’s behaviours seemed to soar into the stratosphere and now, finally…I have rallied.

So here’s a snap shot of some of the things that have been going on in my world while I was away.

Baby J

I had to run from one room to another to intercept an interaction between my 10 month old boy J and my 5 yo L. I went running down the hallway to find the baby crawling towards me crying. In each hand he was clutching a $50 note. He had been rifling through my wallet (not somewhere you would normally find 2 fifties, but it was a long weekend and I had a babysitter coming!).

J is getting more and more adventurous and as a result is having a few interesting interactions with the other boys. This kid is built like a steam roller! He is already heavier than N (who is 2) and it won’t be long before he starts paying L back for all the pushes away he gets.

Meanwhile – he’s climbing and showing no fear whatsoever. I turn my back and he’s….

Mr N

There was nothing I could do to prepare him for what he was about to experience. All I could do was make sure he’d had a good sleep, something to eat and drink. I left the other two with the babysitter and we headed off on the bus to our performing arts centre.

There were a LOT of very excited kids there. There was an impressive sized area cordoned off exclusively for pram parking. There were mums and dads shelling out the big bucks at the merch stand. We made out way in and found our seats. After a bit of waiting the music got louder and before we could say ‘hot potato’ The Wiggles were right there in front of us. N was suitably impressed. He enjoyed himself, he clapped, he danced, he pointed his fingers and did the twist and couldn’t believe his eyes as the zealous guys in skivvys made their way into the audience and walked right past us!

It was exhausting to say the least and not just for me. Little N slept very well that night and dreamt of Captain Feathersword and his friendly pirate crew.

The Big Red Car – yay!!!

Wiggles sing Twinke Twinkle Little Star

My Big Boy L

I love him to bits but seriously, he took me to the edge last weekend. He’s escalating in all his obsessive behaviours – opening a shutting doors a million times a day, turning the kettle on whenever possible, playing with the stove, with all the hot water taps and of course the ribbon. He’s climbing the walls, literally. He was in his bedroom for about 2 minutes and when I went to check he was standing on a high cupboard about to take a swinging jump to hang onto the ceiling fan. He was stripping off all clothes countless times a day. He ignored every request, laughing as he ran in the opposite direction at every opportunity. And the screaming, oh please make me temporarily deaf so I don’t have to hear any more screaming.

I did everything I could to exhaust him and get him to a place where he could just relax and have some fun. We went to the park, we went to an indoor play centre so he could do lots of climbing, we went on a little bush walk and went to a wildlife park, we played, we mowed the grass (which he loves), we ran and jumped on the trampoline. I was worn out, but he could have gone another 20 rounds.

We’re off to the doctor to get some advice on the best way forward.

Where is he?

The invisible kid

Me

Next week I’m heading off for four days of child free fun. One of my younger brothers is turning 50, so it’s the gathering of the clan for a shindig in Darwin. I intend to sleep for as many hours as possible, to have a few drinks and see if I can shuffle out of this mood I’m in. Meanwhile, here’s a couple of photos from the early years and one of the super moon over my hometown. May it bring me super powers.

I made it! 30 days and 30 posts for autism awareness and acceptance. It has been an amazing experience for me. Most of the time it has been easy. I’ve known what I wanted to write about and the words have just flowed. Other times, it’s been really tough. I’ve fallen asleep and woken up with a startle hoping I have enough time to write and publish before midnight strikes. Some nights the babies just won’t go to sleep, so I’ve been holding them in one arm and doing the fastest one handed typing I could with the other.

My domestic duties have suffered (ummmm where IS that vacuum cleaner??? and I think my mop may have died sometime around mid-April), but I was on a mission and I would not be deterred! I tried to think of the people who read this blog, there’s a very broad mix of folk and many of them have nothing to do with the world of autism. Could I keep them entertained and interested while opening this window on my life? I also worried a bit. Am I now officially the world’s most boring and relentless blogger? Oh no! Not another post from Rose… enough already!

So now that I’ve made it to the end, I want to say thank you. Like any good speech, there’s some people who need to be mentioned. The blogathon has consolidated a group I call my ‘bloggy pals’. They are present and accounted for online. They are all wonderful writers themselves and they seem to get me.

So a heartfelt thanks to:

George from Coalescence. What a faithful and thoughtful friend you are. I know you have read and commented on every single post this month. You have cheered me on, encouraging me to feel that my writing has purpose and meaning to others. You are such a great find.

ProfMomEsq – I can’t quite remember who discovered who, but I am so glad that it happened. I love your heart, your humor and your smarts. You’ve got a way with words and a lot to say that needs to be said.

Thanks Cynthia at That Cynking Feeling for all the shares and the links and especially for the co-blog we did on the senses (yours and mine). That was fun to do.

Sarah at Crazy Antelope and I have a lot in common – 3 boys who are brothers by pure genius luck and brought together by love. Also autism, crazy neighbours, Australians and so much more.

Judy – I feel like you are shining a light in the darkness and beckoning me forward, telling me to be brave, that it’s going to be OK. Thank goodness for you.

For all my lurkers and likers – I know you’re out there and I’m glad that you are. Thank you for reading and for your silent approval. I figure if you didn’t like it, you wouldn’t come back, so thanks for coming back.

Family and friends – you help me laugh through my tears and well up when the good times roll. I may be a single parent, but I couldn’t do it without your love and support.

Officially signing off on the blogathon. Regular services will resume soon. Here’s some pictures.

We had a lovely morning in the park today. It was the annual AEIOU fundraiser Paddle For Kids. Even though L no longer attends AEIOU, they still consider us a part of the family.

We needed to get out, after a Saturday of very rainy weather and having to stay indoors, the kids were restless and itching to get outside. It was still quite damp and muddy out and no guarantee it wouldn’t rain on us, but we headed out regardless.

The Paddle for Kids involves some racing on the river by sponsored teams from all the different early intervention centres in the Brisbane region. Our team put on a great show dressing up and ultimately coming last in the final.

The boys had a great time – jumping castle, sausages, cupcakes, running around in the mud and lots of friends who were so happy to see us – especially L’s teachers, learning facilitators and therapists. It was lovely to see and catch up with some of the other families. The fresh air and running around did us all good.

I had my hands full and despite pulling the camera out several times to get some photos, I didn’t get a single one – hopeless! I will update this post with some photos once they come through from other sources.

While I was standing around the jumping castle waiting for the kids an older woman came up beside me and asked if I had a child with autism. ‘Yes, I do, he’s in there having fun jumping around.’ The woman turned to her left and introduced me to her daughter. I turned around to say hello properly. The woman told me that her daughter also had autism and was now 42 years old.

We had a lovely chat about names and about music as she has a special interest in musicals & films. She was able to reel off a few musicals and films that had characters with my name. Her mother said ‘It doesn’t get easier’. I laughed and said ‘Don’t tell me that!’ I really felt for her though. She had raised her daughter in the years when there were very limited services for the autism community – certainly no fun days in the park where we can gather and celebrate our kids.

A lifetime of togetherness. It’s hard to really imagine. You just have to live it to know it. Then tonight I got a message from another autism mum. Her son is in his 20’s and she has told me many times ‘It gets better’. I chose to believe my friend, but in no way dismiss the woman’s statement this morning. My friend and her son are about to head off on an international holiday – what an adventure!

We are generations of mothers, dealing with similar but different issues, joys and challenges.

Disclaimer – I have no alliance with The Autism File and I’m not really sure what ‘we will win’, also not really a big fan of big soppy anthems, but it fit, so here it is.

The book title is ‘The Experts’ Guide to 100 Things Everyone Should Know How To Do’, the author Samantha Ettus. I’d picked this title up at a bookshop years ago and I thoroughly enjoyed reading through it at the time.

Since then, I’ve often thought of these snippets of expert wisdom as I’ve gone about my daily duties. On occasion I’ve had a jolly good reason to pull this book off the shelf and use it as a reference point – mostly in the cause of making the perfect choc chip cookie.

I came across it again recently and was inspired to have another look through it. Things have changed since I first read it, I’m pretty sure I’d be looking at this info with a slightly different filter, in particular that of a mother of a child with autism. I wondered if these 100 things EVERYONE should know how to do would apply across the board? Could this be the guide to my child’s adult life I’ve been looking for?

Let’s see…

Sleep. Oh yes, yes please! Can we ALL learn how to sleep, tonight if possible. Even better would be to learn how to sleep in, but I will settle for plain old sleep.

Make A Bed. Fair enough, it’s one of those self-care skills.

Do Push Ups & Sit Ups. I never learned this and I wish I had. Keeping your body in good working order has got to be something to aim for.

Jog. Forget it, say no more (sorry runners)

Eat Right. Yes, totally on board with this and feeling like we are on the right path. As an independent skill – this one is a high priority.

Make Eggs. Yeah…it’s a good staple, a source of protein. Everyone should be able to cook eggs.

Brew Coffee. It would depend on whether you are a coffee drinker, but I have a feeling my boy will be. He is mesmerised by the smell of coffee and will drink the dregs of the french press if I accidentally leave it within reach. So yes, a good skill to have even if you are only making it for guests.

Read A Newspaper. Well those days are going, going gone baby. It’s all online. Mind you, my boy really enjoys sitting down with the local paper, languidly turning pages in between sips of hot tea. Not reading mind you, but enjoying the activity none the less.

Wash Your Hair. Definitely, half way there already.

Care For Your Skin. An important thing here in the sub-tropics where skin cancer is a real threat, so yes, yes yes.

Shave. Well, he might end up with a beard if he had to rely on me for this one, so let’s say yes.

Make Tea. Haha!! We’re halfway there – he drinks it! That should be good motivation.

Read Aloud. I’ll probably need him to be able to do this at the rate my eyes are going downhill.

Relax. Oh, I would love this. Yes please.

Wash a Car. Even better!

Change a Tyre. Isn’t that why we join our auto clubs?

Change Your Oil. He does love to pour, so I think he’d be great at this.

Mow a Lawn. He loves using his play mower and he’s obsessed with the big mower, so this one is a winner.

Fly a Flag. Not what I would call an essential skill.

Garden. Let’s get grubby!!!

Swing a Golf Club. Hey nonny, nonny NO.

Swim. Yes, yes, yes. Working on that one and making progress.

Hit a Tennis Ball. Maybe. He’s not really good with the hand eye coordination, given his visual impairment, but who knows?

Give a Massage. Let’s say ‘highly unlikely’

Make a Martini. Only if it’s for Mommy Dearest.

Barbecue. Let’s see how we go on that one. He’s a bit obsessed with hot things, so possibly not the best match.

Build a Fire. See 67

Tell a Joke. Backburner…we’ll see!

Be a Gracious Host. Oh but of course.

Be a Good Houseguest. See 36

Arrange Flowers. Seriously? Nope!

Set a Formal Table. Just setting the table will do very nicely thank you.

Uncork a Wine Bottle. No especially not a bottle of champagne with a sabre.

Taste wine. No!

Use Chopsticks. Yes!

Make a Toast. Not make toast. A lovely generous skill to have.

Breathe. Yes, I forget this myself sometimes, so just stopping and breathing – so good for you.

Stay Warm. See 17

Have Good Posture. Yes…don’t end up like me!

Have a Great Smile. Done!

Flirt. Hmmmmmmm! Not so sure. Will have to wait and see.

Ask Someone Out. Yes!

Kiss. Well I’ve taught him the basics, we’ll have to see if we can find the right teacher for the finer points.

Buy A Diamond. I’ve never needed to know how…

Plan a Wedding. Oh gee. Well if he’s like most guys that won’t be too hard.

Change a Diaper. Something every well rounded person should know how to do.

Hold a Baby. It’s a lovely and loving experience, so yes!

Relocate. Nooooooooooooooo!!!!!!!!!

House Train a Puppy. OK, maybe one day…

Create a Family Tree. It will be an distinctive individually shaped tree.

Decorate a Christmas Tree. Great, then he can teach me.

Bake Chocolate Chip Cookies. I happen to know that this is a seriously good recipe , so this is definitely a skill to have up your sleeve.

Give a Gift. Yes, something everyone should know how to do.

Wrap a Present. I’m not great at this, so if he gets good at it, this could be an important contribution to the family effort.

Smile for the camera. Done!

Take a Picture. I would love to see the world through his eyes.

Learn a Foreign Language. English is foreign enough to him at the moment, let’s stick to that task.

Plan a Trip. What a fun thing to do together. Or if it was just him, a magical mystery tour.

Pack For a Trip. So long as I can come along Yes!

Well, sorry it’s such a long list, but I couldn’t cut it short. Turns out it’s not a bad set of skills for my boy to have. These are the skills of a well lived life. It’s not everything and there’s plenty of things in there that I could either learn to do or learn to do better.

Warning! There is an image of the Letterstick Band in this post. Members of this band are deceased and this image may cause some family and friends distress. They are remembered here with a lot of love.

Music has always been incredibly important to me and has been a constant theme in my life. From the very early days I could always lose myself in a great song, a beautiful melody and a back beat. I was always sharing music through my playing, singing and hanging out in dives all over the countryside.

As a baby, my boy was sung to, rocked in rhythm and danced around the lounge room. I wanted him to share my love of music, but like most things it didn’t quite pan out the way I thought it would. Instead, I had a highly sensory, sensitive child and music was just that little bit too much for him to take. He did enjoy short musical experiences where he could touch the instruments and feel the vibrations, but very happy to walk away from it as well.

Lately though things are changing. He is taking more notice of music – enjoying it more, but still very sensitive to certain pitches and tones. There are particular songs and themes that can send him into a screaming, crying, ears covered foetal position. There are others that captivate him and make him smile. I even caught him trying to dance (very rare) this morning.

So I’ve been collecting lullabies and gentle music that is soothing and acceptable to him and I thought I’d share a few of our favourites with you.

The Putumayo Dreamland compilations are wonderful. Putumayo are a NYC based label who specialise in world music compilations. They have a great catalogue of quality music for kids from all over the world.

My favorites from this series are Acoustic Dreamland, Celtic Dreamland and the original Dreamland.

Quite a few years ago now I helped them in sourcing an appropriate Australian Indigenous track for their first Dreamland album. The track is from a group who is ‘family’ to me. They no longer play after losing band members to a road accident. I love this song, sung in Barrarra language of the An Barra clan from north west Arnhem land.

‘Yirrana” (sunset) by Letterstick Band

Here’s a beautiful cover of James Taylor’s ‘You Can Close Your Eyes’ by William Fitzsimmons from the Acoustic Dreamland album

There’s some amazing artists doing beautiful albums for children. Justine Clarke is an Australian actress who is making great albums and dvds that kids just love. Here she is singing ‘Creatures of the Rain and Sun’

And of course there’s the artists who just make luscious music that creates a relaxing environment for our kids. Here’s Lior with ‘Secret Little Garden’ (check out his fabulous website)

And lastly (because I don’t want to use up all my available space in one post) here is a song from an Australian kids show Giggle & Hoot which is screened around bedtime each night. L hates the voices of the characters, but the songs are pretty good and this one in particular is a winner. Sweet Dreams everyone…

Last week I got to meet up with a new bunch of mums. The connection had been made through the parenting course that I finished a few weeks ago. A couple of the other mothers who attended were a part of this group and they had been getting together for some time, but lucky for me they were open to some new blood.

I was sent the address of the mum who was hosting this month. It was in a suburb I had never ventured into, so I had no idea of where I was going or what it would be like when I got there. Luckily I had arranged with Louise for us to travel together – that made it a bit easier.

It was a beautiful autumn evening – not too cool yet but a little nip in the air. How lovely to find that we would be sitting outside around a fire. We were surrounded by enormous trees, rocky outcrops, a dry creek bed, nocturnal marsupials and lush vegetation. You’ve got to love Brisbane surburbia when it can be like this – what a treat!

We chatted and drank and ate and when I checked it was already past the time I’d told the babysitter I be back by. Too quick!

It’s such a gift to have times like these. Good people, all from very diverse backgrounds and experiences brought together by circumstance and our beautiful children.

Post navigation

love many trust few, always paddle your own canoe

I'm paddling! My canoe has lots of little kids in it, lots of moments of madness and the occasional moment of clarity. Sometimes it feels like I'm paddling against the current but mostly we go with the flow. I'm a foster carer in Australia.

Follow Blog via Email

Enter your email address to follow this blog and receive notifications of new posts by email.

The content of this blog is subject to copyright.
Whole posts can be re-posted when authorship is acknowledged and a link is provided back to this site.
If you are interested in using any portions of text, photos or images please contact me directly.